Sometimes having Cowden Syndrome is a huuuge drag. I mean, a big freaking drag. Wrought with doctor appointments and scans a plenty, but that’s the nature of the beast. To, “make sure I’m watched closely if something arises.” You know, it’s funny because just last week I was thinking that things had been pretty quiet lately on the medical front.
Dun dun dun…
Oh, and I also want to add: In case any of you are wondering still if I’m using Cowden Syndrome and Lhermitte-duclos Disease as an excuse to not live life, or why I don’t schedule all my appointments during the summer so I can teach, this is why. When things come up, they come up. I can’t say to my oncologist, “Oh sorry. This isn’t convenient for me.” I have to make my schedule conform to their schedule, plain and simple. That’s just how it works when you have a hereditary cancer syndrome. Deal. With. It. (This is mainly for my ex-friend who verbally attacked me a few months ago with all this garbage.) 🙂
I saw my oncologist on Friday…
- I had a kidney ultrasound on Thursday; the last one I had was April 2014. That one was unremarkable from what I remember. This one? Not so much. Dr. L said I have a lump/bump on my left kidney. She didn’t mention the “C” word initially, but when I asked her about it she said she didn’t know. She named all sorts of things it could be (even technician “technique”) but I find that very interesting when the radiologist named it in her report. An angiomyolipoma. I’ve been told by a few people that lipomas are usually benign, and that’s a big sigh of relief. But, I’m really really really really really trying to not turn myself into a pretzel. Worst and best case scenarios, right? I think I was given all of it, but the little inkling in the back of my mind is nervous. Let’s be honest. So, my doctor is calling for a repeat kidney scan this coming Thursday. My heart is beating fast, but I’m remembering to breathe. Breathing is the only thing I can do right now anyway.
- Dr. L is sending me to an oncological surgeon because of the EGD I had a few months ago. I had “multiple polyps” in my esophagus and I guess that raised a bunch of red flags to some people. (Ha.) I’m not sure what this appointment will entail, but all I know is next week I’m going to be super busy a just a tad nervous. Overwhelmed? Well, maybe. But, I just can remind myself this isn’t brain surgeries and I “got this”. 🙂
The moral to this story is Cowden Syndrome sucks rocks, and it manifests so differently in so many people. I have LDD, but not everyone I know with CS has LDD. I may/may not have kidney issues (it is 33% lifetime risk of kidney cancer BTW with CS), so whatever will be will be. I say that today with all honesty and openness, but I don’t know if I can hold that till Wednesday morning. We’ll see. The point is that I can’t give up. I won’t give up. I guess someone can be both scared and peaceful at the same time?